{"id":3172,"date":"2023-08-06T13:15:40","date_gmt":"2023-08-06T17:15:40","guid":{"rendered":"https:\/\/deborahblackwell.com\/?p=3172"},"modified":"2023-08-06T13:17:47","modified_gmt":"2023-08-06T17:17:47","slug":"going-to-pots","status":"publish","type":"post","link":"https:\/\/deborahblackwell.com\/?p=3172","title":{"rendered":"Going to POTS"},"content":{"rendered":"

<\/p>\n

By Deborah Blackwell<\/em><\/strong><\/p>\n

It\u2019s 2:30 a.m. I wake up soaked in sweat, hot but shivering. Nausea rolls through my belly like a wave. My heart pounds. I sit up, swing my legs off the bed, and try to put my feet on the floor. My head throbs like it\u2019s about to implode. My eyesight is blurry, but I stand up, determined to make it to the bathroom. The cat lifts her head and squeaks out a meow, then hops off the bed and follows me. She knows I may or may not make it without fainting. I try not to wake up Sir Husband, he has to leave for work in three and a half hours. \u201cShhhhh,\u201d I whisper.<\/p>\n

My gait is unsteady. I hold my arms out into the air. For what? There\u2019s nothing there to catch me. When I finally get to the toilet, I exhale. I made it. I close my eyes hoping I can get back to bed easily. The cat swirls around my legs, then waits until I stand up before leading the way. When I crawl back into bed, I pull the covers up as high as they will go around my body, leaving just enough space to breathe. I\u2019m safe. Sort of.<\/p>\n

Welcome to my nights. Why? Because three years ago I ate some salmonella-tainted peaches that derailed my entire life. The bacteria caused Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia \u2014 a serious condition that disrupts the autonomic nervous system. That\u2019s the system that manages all our involuntary functions: breathing, heart rate, blood pressure, body temperature, blood flow, digestion, circulation, thinking, doing seeing. Being.<\/p>\n

Unless you\u2019ve lived it, it\u2019s hard to understand.<\/p>\n

My body calls the shots. Night and day, no warning, no reprieve, POTS mimics heart attack, stroke, and seizures. It brings on random episodes of chest pain, heart palpitations, dizziness, head pressure, extreme drops in blood pressure, blurry or double vision, nausea, numbness and tingling, trembling, sweating, chills, fatigue, weakness, shooting pain, sensations of internal pressure, noise and light sensitivity, tinnitus, brain fog, or any other scary, uncomfortable symptoms it can create.<\/p>\n

It makes me think I\u2019m about to die.<\/p>\n

Thankfully, I\u2019m not. Still, POTS isn\u2019t easy to fix and the road to recovery is long. Ambulance ride after ambulance ride, I landed in the hospital with a laundry list of symptoms that tricked emergency room personnel. Test after test, no conclusion. How could I be having these symptoms when all my organs are fine? Countless times, I looked up from the gurney and felt shamed when I heard, “Nothing is wrong with you, you\u2019re just having panic attacks.<\/em> You have anxiety. Learn to manage your stress.\u201d<\/em> In other words, quit overreacting. Live your life differently and you will be fine.<\/p>\n

Wrong. Panic isn\u2019t the cause, it\u2019s the effect.<\/p>\n

Eventually \u201clong Covid\u201d brought things to light. An infection or disease preceding these extreme symptoms is a tell-tale sign of dysautonomia: a physical disorder the experts know little about. Now, it\u2019s in the queue for research, and I know I\u2019m not alone.<\/p>\n

At least 80 percent of people with POTS don\u2019t have a diagnosis or are misdiagnosed. It can take years to find the underlying cause. Recovery is a \u201cmaybe,\u201d and symptom management is a game. I saw every doctor for every body part. Diagnostic procedures, trial-by-fire treatments \u2014 from Western medications to integrative medicine to traditional Chinese medicine to vascular physical therapy \u2014 and nothing. No relief.<\/p>\n

The first year, I couldn\u2019t even stand up. The hospital was my salvation, my bed, my sanctuary. But determined to heal, I persevered. Tried. Failed. Tried. Failed. Hoped. Lost hope. Like a trampled flower, my body and spirit were drained. Recovery felt way out of reach. Doctors are only as good as their knowledge, but more importantly, as good as a body will allow them to be. My body has a mind of its own, and it demanded I surrender.<\/p>\n

I had to stop fighting the reality of my situation. I had to face this awful hard STOP to learn how to rest. I had to put devices, work, and life aside to listen to my body. I had to learn how to quiet my mind; reign in my high energy; relax habitual tension; bring stress to a simmer; release old trauma; sit with isolation; relinquish control; ignore the to-do list; soothe fear; worry less; breathe more; pace myself; find steadiness; learn balance; foster acceptance, and activate gratitude. I had to slow my entire self down, let go of virtually everything, and hope my autonomic nervous system followed.<\/p>\n

Everything about the way I think, do, see, and be had to change.<\/em> Not an easy task.<\/p>\n

Most of us don\u2019t understand another person\u2019s predicament. We try, but we really can\u2019t know how any life-changing experience feels for someone else. I can\u2019t tell you how many times I\u2019ve heard, \u201cWait, you\u2019re still sick?\u201d It\u2019s defeating, deflating, and depressing. A \u201cYep,\u201d is all I\u2019ve got. While I watch everyone around me live their status quo, I\u2019m still at the mercy of this potentially chronic condition and I\u2019m tired of being in my shoes.<\/p>\n

But I\u2019ve come a long way. Now with some effort, optimism, and a serene curiosity, I can function. I\u2019m getting better. I don\u2019t need a reward, just some understanding until I can say, \u201cWheee! I\u2019m up! I\u2019m regulated! I\u2019m moving! I\u2019m normal! I\u2019m me.\u201d Because even though this is my life, it feels like life is passing me by.<\/p>\n

I have to allow my body to wake when its ready and get out of bed when it wants to. No morning alarm, no pushing myself to \u201cgo.\u201d Sir Husband is out the door early for work, and texts me when he thinks I\u2019ve opened my eyes. Today was no different.<\/p>\n

\u201cHi baby. You up?\u201d<\/p>\n

\u201cOK, I\u2019m getting up now. Wow, it\u2019s late,\u201d I reply.<\/p>\n

\u201cLOL, what are you late for?\u201d he asked.<\/p>\n

Life.<\/p>\n

\n<\/div><\/div><\/div><\/div><\/div><\/section>

<\/p>\n

“Smile, breathe and go slowly.\u00a0<\/em><\/strong>
You have an appointment with life.\"<\/em><\/strong><\/p>\n

Thich Nhat Hanh<\/strong><\/p>\n

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